EUCARE Political Action Group Hanneke M. de Boer Chair

EUCARE Political Action Group EUCARE: Joint initiative of the International League Against Epilepsy and the International Bureau for Epilepsy whose goal is to raise the profile of epilepsy across Europe through education, research and political activity.

EUCARE Political Action Members EUCARE Political Action Group: Hanneke de Boer (Chair) The Netherlands - GCAE Anthanasios Covanis, Greece - IBE Andreas Habberstad, Norway - IBE European Committee Mike Glynn, Ireland - IBE Svein Johannessen, Norway – ILAE European Comm. Cigdem Ozkara, Turkey – ILAE uropean Committee Administrative support: Ann Little

EUCARE Political Action Fonde –Objective: Assess clinical + social outcomes in people with newly- diagnosed epilepsy Political Action Group –Aims Raise awareness about epilepsy among parlementarians European Parliament Establish group of Parliamentary Advocates for Epilepsy –Objectives Identify issues to be addressed by EUCARE within political arena Formulate plan + develop proposal re. political activities

EUCARE Political Action Aims –Raise awareness about epilepsy among parlementarians European Parliament Questionnaire on medical and public health aspects of epilepsy Meeting with parliamentarians Establish group of Parliamentary Advocates for Epilepsy –Resolution Feature during sessions at international Epilepsy Congresses Objectives –Identify issues to be addressed by EUCARE within political arena Promote development of appropriate European guidelines Develop booklet on examples of good practice Promote increase amount of time devoted to epilepsy on curriculum medical schools in Europe Formulate plan + develop proposal re. political activities

EUCARE Political Action Aims –Raise awareness about epilepsy among parlementarians European Parliament –Questionnaire on medical and public health aspects of epilepsy The number of people with Epilepsy in Europe is …………….. The costs of epilepsy in Europe are in excess of……………….. Seizures can be stopped by medication in………………………… The percentage of people with epilepsy in employment is…. Employers cannot obtain liability insurance for staff with epilepsy….. In order to hold a driving licence in the European Union, people with epilepsy must not have had seizures for…………………………… The majority of people with epilepsy have a learning disability………. People with epilepsy should not work with computers……….. One can die from epilepsy……………………………………………….

EUCARE Political Action Aims cont. –Raise awareness about epilepsy among parlementarians European Parliament Conclusion knowledge about epilepsy among parelmentarians and participants IBE Conference: MEP’s Part. Knowledge about the condition80% 85% Number people with epilepsy 35%45% Costs epilepsy50%35% Medication55%75% Employment <40%55% Liability insurance60%65% Drivers licence35%60% Computers85%90% Deaths60%85%

EUCARE Political Action Aims cont. –Establish group of Parliamentary Advocates for Epilepsy –Resolution »Proposed by John Bowis »To be circulated to MEP’s »MEP’s to be invited to add signature to Resolution –Feature during sessions at international Epilepsy Congresses –Copenhagen –Marseille

EUCARE Political Action Resolution –Contents: background information Epilepsy is the most common serious disorder of the brain Epilepsy affects men, women and children of all ages and races, regardless of social status. Epilepsy knows no boundaries, although the scale of the problem varies from country to country based on local, cultural and economic factors. It not only presents people with health problems, but also with a wide range of other difficulties that can affect every aspect of their lives, often imposing substantial physical, psychological and social burdens on individuals and their families People with epilepsy may be viewed with misunderstanding, suspicion and fear leading almost inevitably to stigma.

EUCARE Political Action Resolution cont. –Contents: facts Whereas 50,000,000 people in the world have epilepsy. Whereas 6,000,000 people in Europe have epilepsy Whereas 20,000,000 family members are affected by the condition. Whereas 300,000 new cases of epilepsy occur in Europe each year. Whereas up to 70% of people with epilepsycould be seizure free with appropriate treatment. Whereas 40% of people with epilepsy in Europe do not receive such treatment. Whereas 40% of children with epilepsy will encounter difficulty with school work. Whereas in Europe 40-60% of people with epilepsy are unemployed.

EUCARE Political Action Resolution: –Contents: political background European Parliament jointly with Council of Ministers has significant powers to initiate policy and legislation health decisions, it also has a remit and competency for health promotion under the Treaty of Amsterdam. Parliament plays important role in assessing health impact all European + Member state policies. Health promotion Parliament, and the European Union as a whole, should offer real opportunity to influence education + employment practice. European Union has already invested in several neurological disorders but not yet in most common serious one, epilepsy, despite 6 million people in Europe having the condition, which costs over 20 billion euro per annum.

EUCARE Political Action Resolution –Call to Action –Six million people with epilepsy in Europe call for the right to receive appropriate treatment and care for their condition. –Six million people with epilepsy in Europe want to go to school, want to get a job and want to develop relationships just like every other European. –Six million people with epilepsy in Europe have the right to appropriate information about their condition. –Six million people with epilepsy in Europe want the misconceptions and prejudice and the subsequent stigma to be eliminated. –The European Parliament already has a remit covering health promotion. NOW is the time to raise the profile of epilepsy within the European Union and to work for changes in policy making related to people with epilepsy.

EUCARE Political Action Resolution –Call to Action cont. 6 MILLION PEOPLE WITH EPILEPSY call on the European Parliament to provide legislation to: SECURE availability, accessibility and affordability of appropriate treatment; PROTECT people with epilepsy from discrimination and stigma; ENSURE equal job opportunities for people with epilepsy; REDUCE the socio-economic burden of epilepsy.

EUCARE Political Action Resolution cont. –Call to Action 6 MILLION PEOPLE WITH EPILEPSY call on YOU to: INCREASE investment in epilepsy research; IMPROVE awareness and understanding of epilepsy; INTRODUCE legislation to protect people with epilepsy against inappropriate switching of their anti-epileptic drugs (AEDs) and any other form of discrimination.

EUCARE Political Action PAG Objectives –Identify issues to be addressed by EUCARE within political arena Promote development of appropriate European guidelines Develop booklet on examples of good practice Promote increase amount of time devoted to epilepsy on curriculum medical schools in Europe Formulate plan + develop proposal re. political activities

EUCARE Political Action PAG Objectives –Identify issues to be addressed by EUCARE within political arena Promote development of guidelines –Organise workshop on the development and implementation of European guidelines for broadcasted materials and video games In place: UK (Guidelines for Flashing Images and Regular Patterns) Japan

EUCARE Political Action Organise workshop on the development and implementation of European guidelines for broadcasted materials and video games Participants: –Experts in the field of photosensitivity and epilepsy –Experts in the broadcasting and videogame business –Representation of European IBE/ILAE committees –Members European Parliament –Experts in developing European guidelines Time schedule –May - June 2009

EUCARE Political Action PAG Objectives –Identify issues to be addressed by EUCARE within political arena Develop booklet on examples of good practice –Driving licences legislation Japan, India, EU –Photosensitivity Japan, UK –Epilepsy Care programme Chili –Drugsbanks Chile, Uganda –Anti Discrimination legislation Colombia –Epilepsy Legislation Argentina –MRI Directive EU –Anti-Marriage legislation India

EUCARE Political Action PAG Objectives –Identify issues to be addressed by EUCARE within political arena Promote increase amount of time devoted to epilepsy on curriculum medical schools in Europe First step: Establish amount of time on curriculum medical schools in Europe devoted to epilepsy Gen. Med. Child Psych. Adult Psych. Ped. Adult Neur. Greece 1-2 hrs/yr 1 hour/yr ??1-2 hrs/yr 4 months Ireland 1-2 hrs/yr ?? ½ day/yr ?? extensive Netherlands 1 hrs/yr ?? 1 day/yr ??1 day More info to be collected

EUCARE Political Action PAG Objectives Formulate plan + develop proposal re. political activities –Potential topics: »Promote development of (appropriate) guidelines »HELP!!!!!!!!!!!!!!! »Increase amount of time on curriculum medical schools in Europe devoted to epilepsy »HELP!!!!!!!!!!!!!!! »Develop handbook of good practice »HELP!!!!!!!!!!!!!!! »………………………………… »………………………………...

EUCARE Political Action

Concerted Action for Change We know the problems people with epilepsy have to face today Let’s talk about the solutions

EUCARE Political Action